The McCarthy’s Story

"I don’t normally have someone to play with unless I have friends over, which can be hard at times. I love it when Tracy comes over – she is so much fun, she is awesome! She’s so active and we have a lot of fun!" – Orla McCarthy

When a child is diagnosed with a life-limiting condition, it impacts the whole family, including siblings. This was the case for the Angela and Patrick McCarthy, whose daughter Martha, aged 10, has a rare Chromosome Abnormality called Microdeletion 16P13.11. This causes developmental delay, microcephaly, epilepsy, short stature, facial dysmorphism and behavioural problems. All of Martha’s care takes a lot of Angela’s time, which not only impacts on normal family life, but also has a huge impact on Martha’s younger sister Orla, aged seven.

Parents of children with complex needs do a lot of juggling and ever-increasing feelings of guilt over not spending as much time with any siblings. Trying to give Orla time, attention and a ‘normal’ life is an added strain on Angela when she is caring for Martha.

When the family were put in touch with Sebastian’s Action Trust, the Sibling Support service was a ray of light for Angela. “Orla often asks me ‘when is someone going to play with me?’, and I don’t often have an answer and feel so guilty that I can’t spend as much time with her.” says Angela. “Having the Sibling Support service helps me feel less guilty. There is someone that can come and spend quality time with Orla and make her feel special. It is time dedicated just to Orla, which is wonderful.”

The overall impact of Sebastian’s Action Trust has had such a huge effect on the McCarthys. “It is like having an extended family, there is always someone you can call on.” says Angela. “There is such a great network of families with knowledge of forms and the systems. The events that the Trust put on are also fantastic. The Bluebells is home from home. I can dry my hair and not be judged!”

Family events in a safe environment give the McCarthys the space to spend time together as any other family would, to spend with both their daughters and for Orla to feel included. Angela goes on to say: “There are many different activities that as a family we wouldn’t have otherwise done, but we can now because The Bluebells is a familiar place.”

For Orla, the annual Easter Egg Hunt is “the most fun because you get to hunt Easter eggs!” As for The Bluebells, Orla says “The crazy golf is the best thing about The Bluebells.”

The Trust has been able to offer the McCarthys a range of services but the Sibling Support has proved to be the most critical. It has given Orla some normality, someone to play with and reduced Angela’s feelings of guilt.

Orla finished off by saying “For me, the people are what makes it the most fun!”

The Thompson’s Story

Caroline and her husband Dan were first introduced to Sebastian’s Action Trust in August 2015. Dan, who is in the RAF, had been posted to the Falklands for 6months, leaving Caroline at home with Enzo who was 2 at the time and Luca who was only a few months old. Enzo, who is now 4 years old, has Cerebal Palsy, meaning he requires a lot of Mum Caroline’s time and attention.

For any family with a child with complex needs, the demand on time and attention is greatly increased. However, when one parent is in the RAF, this can put a lot of stress and pressure on the parent that stays at home. With Dan being in the RAF, Caroline is left at home alone to cope with the two boys. “Dan can be away a lot – anywhere from 4 weeks to 6 months at a time” explains Caroline, “Both the boys need and require a lot of my time and attention and it is very difficult.”

One area that is made harder having both the boys are hospital appointments for Enzo, as Enzo is wheelchair bound. At the appointments, he often has to be taken out of the wheelchair. “When Luca was born, it was hard enough with him as a baby as I had to carry him as well as push Enzo in his chair. But at least I could leave him in his seat whilst I got Enzo out of his wheelchair and did everything needed in the appointment. Now Luca can walk, it’s hard to keep him occupied during the appointments.”

The Trust assigned an Outreach Worker to the family. Carla goes with Caroline to any appointments that Dan is away for and helps to keep Luca occupied. She also visits the family at home and helps out where she can there. “Bath times can be tricky, so Carla is a great help occupying Luca whilst I bathe Enzo and vice versa. I can only bathe Enzo when someone else is here, otherwise he just gets a sponge bath. It’s too difficult.”

Trying to stay on top of ‘normal’ tasks can also prove tough. This is where the Outreach Workers help the families they support practically. “When Carla comes to visit whilst Enzo is at nursery, she watches Luca for me whilst I do chores round the house and one morning I managed to have a bath – in peace! A rare treat!”

Both Caroline and Dan’s families live too far away to help regularly and all of Caroline’s friends on the base have their own children to cope with, leaving Caroline to do everything on her own. “Friends try and help and they are there if I need a chat. But it’s often the practical help I need most.”

For the Thompson family, getting help from the Trust has made a huge impact on their lives. Now they have the help of an Outreach Worker, access to the facilities at The Bluebells and all the events, the help has been life-changing for Caroline. “Everyone is so helpful! Sebastian’s Action Trust is understanding. There is clear acceptance by everyone involved – the staff and other families. I now have somewhere to reach out for support when I need it.

The Wardle Story

"It has been brilliant what the Trust have done for me. It’s fun enjoyable and friendly. It’s great doing something different that I normally wouldn’t have the chance to do." – Reece Wardle

The Wardle family were first referred to the Trust in 2013, not long after Reece was diagnosed with Severe Aplastic Anaemia at the age of eight. Now 12, Reece recently underwent a bone marrow transplant. This has meant Reece, and mum Cathy, spending weeks in hospital, missing out on some of the things that many children take for granted.

Sebastian’s Action Trust offers support to the entire family, not just the child. Following Reece’s diagnosis, single mum of four Cathy gave up her job in order to care for him. This caused her to fall behind with rent arrears and the family faced possible eviction from their home. The family’s outreach worker accompanied Cathy to the rent office and helped negotiate an agreement. This support helped alleviate some of the pressure the family was under.

Reece has been able to enjoy a number of events and activity days organised by the Trust. He enjoys visiting the Hub and has attended sleepovers, music and cookery workshops, and a trip to Farnborough Air Show. These events enable Reece to have fun and make friends, but they also give Cathy an opportunity for a break.

The Trust has also put in place a buddy for Reece – a positive older male role model, which he has found helpful. “He did whatever I wanted to do. He played pool with me and helped me control my anger.”

Sebastian’s Action Trust also supports siblings, who have plenty of opportunities to get involved.

When pop star Ella Henderson visited our Slough Hub in 2015 as part of her involvement in Comic Relief, Reece’s older sister, Danielle, had the opportunity to meet her. Ella is the same age as Danielle and was moved by her family’s story and how the Trust helped plan the family budget and how Danielle had to temporarily leave college in order to earn money to help with the household’s cash flow. Despite Ella’s busy life touring and recording albums she still messages Danielle now and then to keep in touch, and they follow each other on social media.

Brother Josh has also been supported by the Trust with assistance completing applications for apprenticeships.

The Trust has been able to assist the Wardles with practical support and advice on financial matters. However, giving Reece the opportunity to simply have fun and enjoy a childhood, despite his condition, has been the most rewarding part of the Trust’s involvement with the family.

Cathy comments ‘The support we have had from the Trust has been fantastic. They are there for the whole family, not just the kids.’ Agreeing, with Cathy, Danielle describes the Trust as a ‘family support system’.

The Southwell’s Story

"Not only has the trust provided us with a welcoming, safe and relaxing place to spend time together as a family but they have introduced us to many families in a similar situation - a true family of families." - Faye Southwell

Henry, now four, suffers with Koolen de Vries and Hurlers syndromes meaning he requires 24 hour care. The mainstream mother and baby groups Faye attended with Henry did not cater for their needs, and Faye found herself somewhat isolated when other mums were comparing the developmental milestones their children were achieving.

Having been told about the Trust by another parent, Faye soon became a regular visitor to The Bluebells, enjoying the pool, which is perfect for Henry’s needs, and day visits with friends. Faye has developed a good network of friends since becoming a service user, and sees them regularly at Trust organised events such as chill and chats, pamper days and sleepovers. It gives her an opportunity to let her hair down and have a break from the rigours of providing constant care to her son.

Henry also enjoys Trust activities and is starting to recognise friends who he sees both at school and at The Bluebells. They enjoy family activities together such as the Christmas in July party, Easter Egg hunt and other activity days the Trust puts on throughout the year – all in a safe, specially adapted environment.

Faye’s outreach worker, Carla, provides practical support, accompanying her and Henry on their frequent train visits to Great Ormond Street Hospital. Henry is not comfortable on long car journeys, so the assistance on the train and getting across London with his wheelchair is invaluable. Carla has also accompanied Faye and Henry on days out –for example a trip to Marwell Zoo – providing an extra pair of hands.

Faye has also had financial support from the Trust, and with assistance from a Finance Support Worker managed to obtain funding for a P-Pod, a supportive bean bag with harness meaning Henry is able to sit in comfort at home. This would normally cost around £700 so without the funding, the family would struggle to afford this equipment – the Trust’s support and knowledge of the application process helped make this possible.